Category Archives: Disability

I went to Chapel Hill, NC, to attend the first conference on autism employment entrepreneurship (January 27-29) and joined 150 others from across the country who were business founders (for profit and non profit) , funders, educators, social service providers, and people considering starting businesses designed to employ people with autism

The conference was sponsored by the Ireland family who found Extraordinary Ventures 5 years ago. One of their ventures is operating an events space, so naturally we met there. It’s a nice two story building across the street from a shopping center which includes Whole Foods. On the upper level is a large open space for events. Downstairs is where three of their other ventures are housed. We were given a tour of the operations and observed a laundry business servicing the frat houses of Duke and Chapel Hill, a candle making business, and a mail room business. They also brought in a Chapel Hill community bus to their parking lot to demonstrate how their employees clean the city buses, usually done at the depot.

Extraordinary Ventures worked with the UNC TEACCH program to apply the TEACCH methodology to work tasks using lots of visuals to provide step by step instructions. Most of the jobs at EV were designed with their own son’s level of functioning as the baseline; this includes jobs with repetitive tasks and consistent cadence of work. As some workers demonstrate more skill, they are given more responsibility. We had a chance to watch staff at work.

The Irelands had two of their adult children helping with the event. Their son with autism came to work for a bit too.

Extraordinary Ventures, a non-profit, decided to take advantage of the college town and hired 5 young adults who wanted to have the opportunity to be entrepreneurs. These young business managers liken it to Teach for America where they dedicate a few years of hands on experience before heading off to business school. They are given the freedom to try business ideas that may fail and have learned to create businesses that fit their employees skills but also meet a market need. They manage the business based on business principals, and lead with the business value, not with the social mission.

For example they discovered that when advertising using Google Ad words, that ads with out the word “autism” pulled better response than ads with “autism”.

Rising Tide car wash is a for-profit business in South Florida. Because of the equipment needed, the land and insurance, the start up costs were extensive – about $3 million. They have been in business for 10 months. Because they created their own very detailed training processes for their employees they learned to not hire people who have had car wash experience. The training process they put their employees through helped to create social bonds, a real challenge for those with autism. They also found that while many people with autism are not motivated by money, that in fact their best employees are. They particularly respond to the tips (which increased when customers were informed of the mission of the car wash) They have a site to share their business concepts: Can Do Biz

AutonomyWorksis a benefit corporation, a new type of corporation structure that allows executives to make decisions that are in the best interest of the business mission even if it does not maximize profits. The founders chose the for profit approach because they wanted to attract capital from investors. They identified the business opportunity to do work that many corporations have been off-shoring or out-sourcing (ie sending to India, Singapore, or other low wage English-speaking countries). The work includes marketing operations such as website content management, quality assurance, analytics and reporting such as analysis of marketing campaigns, or social media analytics.

They lead with their business mission rather than their social mission and need to be competitive in order to get contracts. Their goal was to get as good as neurotypical but found they are better than NTs. AutonomyWorks requires their employees to delivery a quality product that meets their standards but is flexible on productivity.

To on-board staff they have them job shadow to introduce them to the work, since interviews just don’t work for people with autism. They need to demonstrate what they can do. AutonomyWorks designs their work assignments for the way people with autism learn and work best.

AutonomyWorks management created work instructions with visuals, they apply good management practices including setting clear expectations, providing feedback on performance

Employees have their say

A panel featuring two employees shared their work experience. Patrick who worked in the EV laundry was quite self-aware when he said he can handle change if only one thing changes at a time. He was told he should think of himself like a rubber band that should be stretched, but only so far before it breaks. Another employee who worked in a bike shop talked about turning obsessions into something that is more productive. He said he would like to be able to advocate for people with autism.

Peaks and Valleys

A panel of support staff talked about the great variability between strengths and weaknesses – with high highs and low lows. Unlike the school system which looks for what is broken and attempts to fix that, the work place is where strengths and skills are identified and focus is put on that. Look to apply an employee’s strength to a job task – which may mean defining micro-tasks.

What about girls

In response to my question about any differences between the male and female employees, one of the business managers stated, compared to parents of boys, the parents of girls seem to underestimate what their children can do; they tend to think they have significant limits and the parents are more “protective” of their daughters.

As a mother of a 17 year old girl with Autism and a loyal customer of Disney, I have been reading many of the blogs and comments about the recently announced changes to the Disney theme parks policy regarding “special” access for people with disabilities.

Much of the conversation is around what “typical” (ie non-disabled) people think or feel. It is unfortunate that so many non-disabled people feel that they are being put out or even cheated because of a policy that really does not have any negative impact on them. Just think about it: if all people with disabilities who had been receiving special assistance were to join the main line only one of two things would happen: the wait line would get longer for all, and it would get less comfortable for all (as a developmentally disabled person may actually have a meltdown right next to you!)

Part 1: The impact on Disney’s non-disabled customers:
We took our daughter Rose* to Disney World for the first time when she was 6. We made it just a day trip from Tampa. I had heard about a special needs access pass but wasn’t sure how to obtain one. And besides, I was still at the phase of thinking ‘one more speech therapy session and she will be all better’ so who needs a special pass? (Admit it, some of you also had that silly thinking too). We paid full price for our tickets and were able to go on a few rides – we took lots of breaks for sensory overload recovery. It wasn’t all that crowded when we went but we still had a few lines. While waiting I was thinking, ‘Wow, this is amazing, look at how well she is doing’. Amazingly, I was actually feeling joy in the happiest place on earth. For a few minutes. Then the mom next to us asked her daughter to stand still in line. The girl responded, “but that girl isn’t standing still” and the mom glared at me and said “there is always one in every crowd”. Ouch. (Eleven years later and I still feel the punch in my gut). At 6 years old, my daughter, with little speech, could not have even responded to me the way her daughter did to her mother. I wish I had said to her: actually there are 1 in 500 kids her age …. (that was the stat when Rose was diagnosed with Autism in 1998).

I missed the opportunity that year to educate other parents at DisneyWorld. The following year we went back, this time for 2 days, and were able to obtain the special needs access pass by bringing a signed note from Rose’s doctor describing her disability. This time I saw the marketing opportunity and so had printed cards to hand out that said: Why is this child behaving this way? with an explanation of autism, and a suggestion that they help with a donation to National Alliance for Autism Research (now Autism Speaks) including phone number and website. With the special access pass we were able to avoid long waits by entering at the Fast Pass entrance along with other people who had Fast Passes. I also made a behavior chart and awarded Rose stickers for 15 minute time blocks, and she could then “redeem” the stickers for Disney merchandise in the hundreds of gift shops at the park. Of course there were still challenging moments but overall it was a wonderful experience.

We continued to go to DisneyWorld almost every April with a 2-3 night stay, and the rest of our vacation week was on the Florida gulf at a family home. We requested and used the special access pass for all our visits. This did not mean there were not behavior challenges (it is not a pretty scene when your 12 year old child has a violent meltdown, especially in public.) But for a few days, we were able to enjoy an experience as close to what a “typical” family was having. Yet, I don’t think any typical family would want to trade places with us for those 2 days. And I know they would never trade experiences for the other 363 days of the year.

I don’t understand why people who have advantages begrudge those who need extra support to access what typical people can do on their own. When I am in the supermarket checkout line and another customer pulls out food stamps to pay, I don’t say “lucky them, I wish I had food stamps so the government can help me buy food”. Rather, I think, thank goodness I have the skills, education, and good fortune to be able to have a job and afford to pay for my food, and I am lucky to live in a country where we can accommodate those who do not.

The Disney parks special access pass has nothing to do with people who are not disabled. We families who live with disabilities do not owe an explanation or need to apologize or defend the need for the pass.

Part 2: Disney as a business and their commitment to their value proposition: The Happiest Place on Earth.
Is that value proposition only for a select group of people? Are Disney parks only targeting people who are able-bodied and neuro-typical? or do they mean to make their parks the happiest place on earth for everybody? As an experienced marketer myself, I am sure Disney, who is one of the best marketers in the world, knows that the largest minority group in the world are people with disabilities (even the UN has acknowledged this). And I am sure Disney does not want to miss out on that market segment.

Many children with developmental disabilities are very brand loyal to Disney. And they grow up to be loyal adults. My guess is that people with disabilities who are Disney customers actually spend more per capita with Disney both in their youth and through adulthood compared to the non-disabled market segment. Disney marketers should be calculating the life-time value of their customers.

I tried to take inventory and found for the first 17 years of Rose’s life she has been worth nearly $20,000 to Disney!!! My guess is that she will be worth about the same in the next 17 years and forever (assuming we continue to go to the park.) If we don’t go to the parks anymore I would cut our value for the next 17 years to about $5000, or only 25% of what we could be worth.

Here’s the breakdown of our Disney expenditures by Rose’s family 1996-2013

Frankly, for me 10 visits were enough, but when you have a child with limited skills and interests, and with a career ambition to perform at the 3 pm show at Cinderella’s castle, then our family continues to make that “investment” in Disney. I expect Disney to make the same investment in their lifetime loyal customer, and provide her the assistance she needs so she can keep spending money with Disney.